Newborn’s form of albinism causing health concerns

Six weeks ago, a little boy was born with a rare condition, which affects only around 35,000 people in the United States, to a young couple living in Aloha Township in Cheboygan County. Khyran Dustin was born with a form of albinism, which causes sensitivity to light, vision impairments and lack of pigment in the skin. He is the son of Sonya and Tel Dustin. “There are several different types so we have to narrow it down to the type he has,” Khyran’s mother, Sonya, said. “Some of the conditions vary from internal bleeding, easy bruising, digestion issues and major vision problems.” The type of albinism Khyran has isn’t certain at this time, but his family is working with several different doctors around the state, including in Grand Rapids, Ann Arbor and Traverse City. “We know Khyran can see to an extent. He is already very light sensitive,” Dustin said. “He already has sunglasses and needs to be kept out of direct light; even the glare from the TV bothers him. We live in the dark. We always have our lights dimmed. We always have his car seat covered in the stores or going out so he’s not bothered by the light. We are really careful with germs due to not knowing what type of albinism he has right now.” Dustin said they won’t know the extent of his vision loss until he is talking and able to explain to his parents what he can and cannot see. According to the Mayo Clinic’s website, there are several different types of vision loss associated with albinism, including sensitivity to light, astigmatism, and rapid, involuntary back-and-forth movement of the , also known as nystagmus. “He suffers from a condition called nystagmus,” Dustin said. “We really don't know what kind of treatment he will need as of right now other than vision correction of some sort.” According to the website, the cause of albinism is a mutation in one of several genes. In most types of albinism, the person has to inherit two copies of the mutated gene, one from each parent, in order to have the condition. If a person has only one copy, their offspring will not have the disorder, because it is due to recessive inheritance. The mutation in the gene may result in melanin not being produced at all, or a significant reduction on the amount produced, causing a pale look to the skin and white hair. The type and amount of melanin produced by the body determines hair, skin and eye color. Dustin said no one in her family has any signs of albinism, and while she was pregnant, all signs pointed to a normal, healthy baby. “When Khyran was born I remember the doctors commenting on the color of his hair and how he was a 'toe-head.' His hair was light. I asked if it was normal and they said they assumed he was just a blond,” she said. “The nurses didn't notice anything in the delivery room even though they had to pry his eyes open to apply the antibiotic to his eyes.” Later that night, when she and her husband were back in the room, holding Khyran with the lights dimmed, they noticed something was different when he opened his eyes. “They were almost see-through, like they had a blue tinge and a red backing,” she said. “I called in the nurse who told me she would call the pediatric doctor. He came in the next day and told us that Khyran had albinism, but he had never seen it and really didn't know anything about it. It was one week later that we had a meeting with a doctor that informed us a little more about it.” Dustin said the family isn’t too worried about any complications and will take it one day at a time. Their only concerns are how well Khyran will be able to see and if there are any other medical complications that go with the disorder. “One of our bigger worries is society, his peers. School might be difficult for him with his conditions. He will always look a little different,” Dustin said. “We live by the phrase, ‘Don't teach your child what they don't know.’ We plan on making him feel just like every other child. To us he’s not different.” They couple have four other children, three together — one from a previous relationship. Harper age 5, Lillyan age 4 Ryeker age 4 and Genavieve age 1 1/2.† The family will be holding a benefit dinner for Khyran Feb. 8 at 5 p.m. at the Eagles in Cheboygan to help with ongoing medical costs. The public is invited to attend.